Discussion Dates: Friday 15th April to Friday 29the April
1. What would you rate this book out of 10 and why?
Carissa: 10. His writing is succinct, thoughtful and inspiring. There are some utterly beautiful phrases. When telling us about diagnoses of inoperable brain tumours, he says "In these moments, I acted not, as I most often did, as death's enemy, but as its ambassador". "When there's no place for the scalpel, words are the surgeon's only tool". There are so many other examples. I shall try and find some that struck me forcibly and add them later.
Sharyn: 7.5. I really enjoyed this book. It made me think more deeply about death and the different ways in which it can be approached. 'Thoughtful' and 'succinct' is the perfect way to describe the writing, Carissa, and that was no doubt a product of the limited time in which Paul had to write the book and the clarity of thinking that his impending death brought about. It is an unusual and unique book because Paul examined his death in a detached and dispassionate way, yet with beautiful, elegant prose. The most beautiful passage for me (at the risk of sounding cliched) was the final message to his daughter: "When you come to one of the many moments in life where you must give an account of yourself, provide a ledger of what you have been, and done, and meant to the world, do not, I pray, discount that you filled a dying man's days with a sated joy, a joy unknown to me in all my prior years, a joy that does hunger for more and more bust rests, satisfied." Apart from being a powerful, comforting and self-affirming message for his daughter to carry through her own life, that passage was interesting because it was the only time when really Paul acknowledged that his personal relationships were as fulfilling as his professional life.
Gen: 8/10. I really enjoyed this book, but like you Sharyn I was surprised that it was a rather detached read rather than a deeply emotional one, perhaps as a result of his very fine scientific mind.
Mel: 9/10. I think that 'When Breath Becomes Air' is a beautiful little book. It heartens me that in this world of ours which often feels cruel and calculating that a book like this is so high on the best sellers list all around the (western) world. We (the public) get treated like imbeciles most of the time by our politicians and the mainstream media and yet there is obviously a groundswell of people interested in Kalanithi's story and his presentation of life and death. I have to agree that it was more of a detached read than I was expecting and I came away thinking as much (maybe more) about his life as a student/doctor/husband rather than his death.
Lara: 8.5/10. I picked up this book in New York in January after reading a few articles about it in the New York Times. It was a beautiful crisp New York day and of all the books in this tiny bookstore, I was drawn to it because it seemed beautiful despite being about something so sad. I was impressed with Kananithi's journey, his questioning mind, his love of both literature and science, and in particular his urgent need to share his experiences and highlight something so fundamental about life in the face of tragedy
Rachel: 9/10 Enjoyed feels like the wrong word but I literally couldn't put this book down. I found it so compelling I finished it within 24 hours. Like you Gen, I was surprised by the scientific focus of the book but this only added to its appeal. It was genuinely interesting to hear about the journey of a medical student and the genius of the operations that neurosurgeons perform. I had feared the book would be a harrowing read but it was remarkably inspiring. In fact, it wasn't until I got to the section written by Paul's wife that sobbed fairly uncontrollably onto the pages.
2. How did you come away feeling, after reading this book? Upset? Inspired? Anxious? Less afraid?
Carissa: Inspired. Even Lucy's contiribution was uplifting, though it made me infinitely sad. The only thing that made me anxious was the thought that Paul Kalanithi must be very rare among surgeons, who probably mostly see patients as cases, rather than focusing on their identities and souls, as he did.
Sharyn: I expected the book to be a real tearjerker and was surprised that I wasn't emotionally moved until the last few pages of the book and then the touching, beautiful epilogue by Lucy. I came away feeling less afraid, partly because Paul had a sense of purpose and achieved some of his goals whilst dying, but also as a result of Lucy's description of the way in which the family came together at the very end and blanketed him in love. Without discounting the physical pain he must have been in, that was a pretty beautiful ending in the scheme of things.
Mel: Sharyn - I agree completely. At no point was I distressed by Paul's death until I read Lucy's epilogue. Paul didn't want his readers to be sad - the sadness and grief of death is not what he was trying to convey. I couldn't say that I am less afraid of death from reading the book - what Paul went through was horrible - both emotionally and physically terribly painful. Paul's death at the hospital surrounded by his family also made me think about how important it is for the loved ones left behind to have the opportunity to say there goodbyes and how hard it must be to loose someone suddenly. And yes I do think that I feel inspired by Paul's - by his life and by his ability to articulate his thoughts about his impending death.
Lara: I would say inspired overall and that's why I wanted you guys to read it too. He certainly has an important message to share and a unique voice that pushes you to think. Of course there is a big part of me that continues to find it hard to accept when fate takes someone so talented and with so much to life for -- but if there is anything I've learned, its that there isn't any justification or rationale -- just better ways to handle what's thrown at you.
Rachel: It was an excellent choice Lara, and I am SO glad you chose it for your selection. I don't think I would ever have ventured to read it if it were not for the bookclub. I echo all of your sentiments. It was very inspiring and it has actually made me start questioning what more I could be doing with my life. Definitely didn't help with my feeling of wanting to escape Singapore and return to my family and close friends..
3. How do you think the years Paul spent, tending to patients and training to be a neurosurgeon, affected the outlook he had on his own illness? When Paul wrote that the question he asked himself was not “why me,” but “why not me,” how did that strike you? Could you relate to it?
Carissa: I could understand it, because of his immense compassion and also because he had seen so many totally inexplicable life-threatening conditions of the brain and other organs.
Sharyn: I think that when you spend years working in any area or profession, you become more emotionally detached by the subject matter than the average person. I know that I feel that way about the area I work in (law/employee relations) and have to some extent become more desensitised to workplace issues such as bullying and harassment and having to terminate people's employment. That must especially be true for surgery, which almost necessitates a person to strip away the emotion so that they can act with clarity and precision in the most stressful situations. When you see people being inflicted with life-threatening or terminal illnesses every day, that must demystify and almost normalize it, so I think Paul's reaction was completely understandable. I would like to think that would be my reaction but I suspect that I would be in the "why me?"/pity party camp.
Gen: I liked this line, as of course most people think 'why me' so it took a great leap to think 'why not me'. I liked how he strongly reminded the reader that this is the fate of all us, it just happened to him in a very intense and short period.
Lara: I loved his perspective. He knows better than anyone what his diagnosis means, but is analytical enough to realise that he's not special or protected from getting something so horrible. I think he certainly had the "why me" moment, but focused on the "why not me" and that helped to ground him as he struggled to deal with his new world.
Mel: I found this confronting as I pride myself on being terminally optimistic. If I need to have medical tests I think that there is just no way that I will have anything bad or wrong. I have 3 tumors in my liver which I need to have a CT scan on yearly. My specialists tells me that I am exceptionally laid back about the whole thing compared to the majority of patients when he mentions the T word. I have always been (although this is decreasing) incredibly optimistic about Ben's MS too. When we got engaged a couple of friends questioned whether this was a road I wanted to go down - near certainty of one day having to care for a husband who might end up blind/in a wheelchair/worse. I just couldn't ever see that happening. So Paul's remarks stopped me in my tracks. Why the hell shouldn't my tumors be cancerous? Why shouldn't Ben's MS become aggressive and totally debilitating?
Lara: Wow, Mel. I was editing when you were and copied your bits into this version so we wouldn't loose them....and then I saw this. I can understand how this would shake you, but I also think that your positive attitude has a lot to do with the fact that the tumors haven't progressed and Ben has done so well. I'd rather be around the positivity.
Mel: I just cut and pasted my responses into a word doc so I wouldn't loose them. Are my answers in green for you? They are for me.
Sharyn: Mel, I admire your positivity In the face of your own health concerns as well as Ben's. I am a glass half-full/worst-case scenario kind of person, which is very unhealthy.
Rachel: Agreed Sharyn, every time I watch the movie Madagascar 2 with my kids, I always relate very strongly to the character of the giraffe - the slightest lump or bump and I fear the worst. Mel, you know how much you inspire me already and reading your words makes me love you even more. Such strength of character. Paul was the same - that chapter when he returned to work to complete his residency and soldiered on through long shifts with gruelling back pain was very humbling to read.
4. Paul had a strong background in the humanities, and read widely throughout his life. Only after getting a Master’s in English Literature did he decide that medicine was the right path for him. Do you think this made him a better doctor? A different kind of doctor? If so, how? How has reading influenced your life?
Carissa: I am certain that it made him a better doctor, both in his approach to the operations he undertook and in the way he discerned the needs of patients and their families and spoke to them. Reading, with his kind of awareness, must, surely, have contributed to his ability to analyse people's personalities and to adjust to all the shocks that he met. His reading must have exposed him to philosophies that helped him to cope with and to lead others to cope with disasters. Reading must also have enriched his experience of life and helped him to use language with such remarkable effect, when describing his own thoughts, philosophies and experiences. He approached literature through the prism of his interest in the brain and the mind and the meaning of life - hence his literature thesis about the poet, "Walt Whitman and the Medicalization of Personality". His study of Beckett, Nabakov, Whitman and others informed his approach to medicine. He often quotes from writers, when confronted with a medical situation. I have no doubt that reading has enriched my life. I have read about things that I could never experience. I have read thoughts and ideas that are expressed in a way that helps me to express my own. Reading takes me beyond my own little life.
Sharyn: I share your sentiments, Carissa. Above anything else, reading exposes me to other people's perspectives, which makes me a more empathetic person. I am always shocked at the lack of bedside manner of doctors. Paul seemed to have a deep understanding of the importance of his relationship with patients and their family, which was no doubt influenced by his passion for literature. I was struck by the way that he focus;.ed on the quality and meaning of life and would ask families faced with a difficult decision about whether to artificially support a loved one's life to consider whether they would be the same person if they lived.
Gen: Yes I think so too, especially as so many doctors are very focused on their particular specialty (as they have to be often from very young as it takes so much time and effort to be an expert) that they sometimes forget the 'bigger picture' of treating a whole person not just a disease- so I think his wider experience helped him to have a deeper sense of humanity.
Lara: Absolutely it made him a better doctor. I think being more well-rounded in particular the combination of humanities and science gives him a perspective and empathy that so many doctors lack. I felt that it would have been a privilege to meet him - what an intellectual powerhouse, but with a massive dose of humanity.
Mel: I was astounded by Paul's ability to be such a deep thinker on such a wide range of subjects at such a young age. His love of literature was fascinating, and yes I do believe it made him a different/better doctor as I think that it would have made him far more reflective on his work and the way in which he engaged with his patients.
Rachel: Yes, that passion for literature which comes hand in hand with empathy for the human experience was exactly what made Paul the great doctor he clearly was. I could see so clearly how so many of these surgeons you meet develop god-complexes and get lost in their ego (my sister is an IC nurse and is very scathing of some of the millionaire surgeons she works alongside). What was wonderful about Paul was his only humility and moments of self-reflection and self-checking (e.g. the cadaver chapter) in his handling of critically ill patients and their loved ones. He valued dignity and was astutely aware of the consequences of that being taken away from someone.
5. What did you think of Paul and Lucy’s decision to have a child, in the face of his illness? When Lucy asked him if he worried that having a child would make his death more painful, and Paul responded, “Wouldn’t it be great if it did,” how did that strike you? Do you agree that life should not be about avoiding suffering, but about creating meaning?
Carissa: At first, I felt concerned for the child and wondered whether this was a selfish decision, but the child would inherit a very special genetic make-up. We know little about Lucy, except that she had the strength to tell Paul that she needed time on her own to work out what to do, if they seemed to want different things from marriage, but then to put her concerns behind her and be totally supportive of him, when she discovered that he was so ill. Also, she wrote that beautiful final chapter. She is obviously a pretty special person. Paul is an exceptional person, as are his parents. His mother, coming from rural India, takes on the education system in Arizona, to improve it. She is a very spiritual and devout person, with a deep sense of philanthropy. Added to this, I think it is understandable for a couple, who had planned to have a family, in due course, but are suddenly about to be separated by death, to want to have a child before it is too late. It is a very big decision, but infinitely preferable, I think, to "freezing" genetic material, to be decided about by the survivor. Lucy risked having a hard struggle, nursing Paul, as well as being pregnant and then looking after a helpless baby. Then, as a widow, with a small baby, working will be difficult, but Paul and Lucy are not the kind to be deterred by difficulty. I am not sure that I understand Paul's remark about pain, except, possibly, as an ironic reflection on the pain that he is in already. Or, could it be associated with his search for the meaning of life? I think that part of the meaning of life is to alleviate suffering in others, if possible, and, if not possible, to help people to work out how to cope with it. Experiencing suffering oneself certainly helps one to understand what others suffer. If you have lost somebody close to you, you are more able to comprehend the pain of grief felt by others. If you have experienced failure, disillusionment, or betrayal, you may be better equipped to help others overcome the pain of these experiences.
Sharyn: Yes, it must have been a difficult decision. Having a newborn baby is demanding and all-encompassing and so I could relate to Lucy's concern that it would overshadow Paul's remaining time and possibly even detract from their remaining time together. It must have been heartbreaking for both of them knowing that their child wouldn't grow up with its father.; However, I would have wanted a child if I was in Paul and Lucy's position. I am reminded of that saying which goes something like: to love and to lose is better than not to love in the first place. Their decision to have a baby was very much in line with Paul's philosophy approaching death, which was to create meaning and purpose. I really admire and am touched by that. I think his quote speaks volumes about his love for life and about how the more achingly beautiful your life is and your relationships are, the more painful death will be, but how that is totally worth it in the end.
Gen: I can totally understand the desire to create a continuing genetic piece of him that would carry on after his death. I really admired his focus on life as having meaning not just happiness or an easy road.
Mel: I totally understand their decision to have a child together - as individuals and as a married couple.. You don't really get a sense from Paul about just how challenging it was to have a new born baby in the house while he was dying. But I guess by this stage Paul would have got to have some lovely cuddles but not been able to be much more hands on that that, while Lucy would have been bearing the brunt of no sleep and stretched and stressed beyond my wildest imagination.
6. Given that Paul died before the book was finished, what are some of the questions you would have wanted to ask him if he were still here today?
Sharyn: I would want to ask him whether that 7 or so month period where he went back to neurosurgery after being diagnosed and treated for lung cancer was really worth it. I can't help but think it contributed to his death, or at least the speed of his death. It cannot be healthy, even for a person in good health, to work those hours and endure that physical and emotional stress. Whilst he got to graduate, it meant less time with his family and less time writing, which I feel had become a greater priority at that stage. I would also ask him whether he was satisfied with his oncologist. In one sense, her philosophy complimented his because she refused to engage in discussion on his life expectancy and instead suggested that he make decisions about the future according to his "values". It was interesting to note that when she finally told him how long she thought he would live (5 years left), she was wrong: he only had months left. It is scary to think that one of the leading specialists in the area can get it so wrong. I would have been annoyed about that!
Gen: I did wonder about the connection between the extreme stress of his job and the development of such a terrible disease... and would like to know more about what he thought about that.
Mel: A great question indeed. I admit that I winced when Paul decided to go back to surgery. It just seems to be such a punishing lifestyle. In fact, that is the essence of my question. Paul details vividly the hard work, exceptionally long hours, high pressure, almost marriage ending existence of being a surgeon. Paul's take on his residency is that he really had no other life but the residency. So I guess my question would be is there any point that he would have changed direction and lived a life that was less stress inducing and allowed him to experience more of the world outside the OR?
Lara: I think considering the sacrifice that Paul had already made in order to be a neurosurgeon, I understood his mindset, but it made me think what I would do and while it would have been satisfying to see it through, I would have felt guilty about not spending that time with my family. Still, it was so central to his life, it was really the only decision for him to make - even if it sped up his death.
7. Paul was determined to face death with integrity, and through his book, demystify it for people. Do you think he succeeded?
Mel: I certainly think that Paul faced death with the utmost of integrity, but death can come to us in so many forms that I wouldn't say that I feel that it has been demystified for me.
Lara: I think death will always remain a bit of a mystery, but I think there is so much we can learn in terms of how to approach it, the attitudes we have towards it (think of how Mexico handles/celebrates the Day of the Dead in such contrast to more anglo-saxon attitudes), and perhaps how to accept it with grace after fighting as hard as you can to live. I came out of the book with huge respect for Paul's search for meaning and I think we all have to go through that journey in our own way.
Carissa: I should have wanted to ask him what he thought lay beyond death. Had he seen any spiritual clues among those whom he saw die and among their loved ones. He wrote that love, hate,hope, fear, passion, beauty, honour, duty were not measurable by science and yet were part of being human and so they were supernaturally made attributes. What happens to these aspects of humans when they die physically/medically/scientifically?
Sharyn: Yes, that would have been interesting to know. If my recollection is correct, Lucy's epilogue referred to the fact that Paul was quite religious. It would have been interesting to know how he reconciled the scientific and spiritual views on life after death.
RacheL: No, I'm not sure he does. Integrity absolutely, but demystify not at all. He was simply too ill to write through the final days in the lead up to the death. That final section of the wife's epilogue where they are all with Paul in the hospital room awaiting his final breath is a tough read and for obvious reasons there are a lot of medical details that are left unmentioned. I just don't get it - if I'm the one in the bed, am I scared, am I struggling for breath, am I in pain? I know it sounds macabre but I suppose this is where my fear of death and the unknown lies. AS you say Lara, mystery does remain and I guess II chose for it to remain until I no longer have that choice. As mentioned above, my sister has worked for a long time on an intensive care unit and I know that she, and the likes of medics similar to Paul, see the hard cold reality of death in a way that none of us do. It has definitely shaped her attitude to life and I know there are times where she goes 'dark' as a result of what she witnesses on her ward. Yikes, its Friday night and I'm starting to feel really melancholy. Wish we were all having this discussion together over some bottles of wine...
8. In Lucy’s epilogue, she writes that “what happened to Paul was tragic, but he was not a tragedy.” Did you come away feeling the same way?
Sharyn: Definitely. He had a loving family. He achieved his dreams. He got to indulge in two very different passions: literature and medicine. He faced death with bravery and integrity.
Mel: I love these words and I think that they are perfectly expressed about Paul. Paul dying so young is tragic as I do feel that the world has lost out on his intellect and his kindness. But his death is not a tragedy as such as he had achieved so much and he was able to say goodbye to his loved ones personally and leave behind this book that we can all gain from.
Lara: When I recommend this book to others, that is basically what I say -- i.e. I describe the tragic circumstances, but I reinforce that what this book describes is truly beautiful and offers an important and inspirational narrative on a tragic situation. Some people buy it, but I can see others don't want to go there. Their reaction tells me about them too.
Carissa: I certainly did. Paul was the opposite of a tragedy. He had succeeded way beyond most people's aspirations and abilities. He had helped countless patients and their families to re-capture their identities, find new ones, or to adapt to enormous changes. He had contributed to neuro-scientific research. He had been a warm and affectionate son, brother and husband. He had even had a tiny chance to be a father, whose daughter will grow to feel she knows him, thanks to his letter to her and to this book.
9. Lucy also writes that, in some ways, Paul’s illness brought them closer – that she FELL feel even more deeply in love with the “beautiful , focused man” he became in the last year of his life. Did you find yourself seeing how that could happen?
Sharyn: Yes, totally. I imagine that when you are faced with a terminal illness you strip away all the distractions and petty worries from your life and focus on what what really matters. This must enhance the quality of your relationship and make the remaining time together so special.
Gen: Yes I agree Sharyn and this is a such a common thing you hear when people have gone through something like this- and yet we all just get caught up in the pettiness of life rather than appreciating every small moment- why is it that it is so hard to have this appreciation without going through the near death/death experience? I read this quote once from the actor Timothy Spall who recovered from leukaemia: "The experience, he says, was profound on every level. “When I was ill, I can remember going into the park, looking at a tree and thinking, 'That will do me. That tree, right here and now.’ To be alive and to be seeing it felt profound. “But you can’t stay in that state of profundity forever. You don’t forget the state, but what you want most is normal life and to afford yourself the luxury of a moment of boredom, which, when you’re dying, you don’t have. “I knew that I was truly recovering when I could start being unreasonable again. Ranting at a traffic jam is not a luxury afforded to a dying man.”
Mel: Yes, I do see how that could happen. Health is everything, and when you don't have it your whole life gets stripped back and then when you are well again you tell yourself that you will properly appreciate every aspect of the life you have missed while you were sick. But of course it doesn't last.
Carissa: Yes, I found that very likely. They were both living each day with heightened awareness. They were both noticing each other and their surroundings in the way that Timothy Spall looked at the tree - positively and with thanksgiving, dwelling on the best and most precious in each other. In addition! They were filled with the wonder of the birth of a new little being, who was part of them both.
Sharyn: That quote by Timothy Spall is spot on!
10. How did this book impact your thoughts about medical care? The patient-physician relationship? End of life care?
Sharyn: I am still grappling with this question. On the one hand, it's so much better as a patient to have a doctor like Paul who is sensitive to his patient's and family's emotional needs. On the other hand, this must add another burden to an already stressful job. I can't help thinking that surgeons need to be emotionally detached and clinical in order to be able to make fast decisions under pressure, and also as a self preservation mechanism. I wonder if the guilt that must accompany the job is much greater when you are more emotionally attuned like Paul.
Gen: I thought the discussion about whether you were better or worse off having knowledge and people treat you that knew you was an interesting one
Carissa: It reminded me that the quality of medical care is dependent on individuals. Paul Kalanithi was an exceptional doctor. He did not seem to me to get too attached to his patients. He was aware of their emotional and spiritual needs and of those of their families. He was particularly interested in the value of the patient/physician relationship. He saw the physician's role as that of guide and protector until the patient had recovered sufficiently to make his own decisions. His skill as a surgeon was obvious. It made me realise what an incredibly complex profession medicine is, especially neuro-surgery. A surgeon has to be extremely dexterous and to have immense powers of concentration and physical strength. It was interesting to read about Kalanithi's reaction to being a patient. He records how Emma says that, while she knows that he is capable of planning his own chemotherapy treatment, she is also ready to do this without consulting him, should he decide just to be a patient. I agree with Gen that it was interesting to hear that doctors do not do such a good job of treating those they love. I should like to know more about why that should be the case.
11. Is this a book you will continue thinking about, now that you are done? Do you find it having an impact on the way you go about your days?
Sharyn: I did find myself thinking about the book and committing to a more meaningful life in the days after I finished the book. However, as tends to happen, I got caught up with the daily distractions again and forgot about it. Spending time answering these questions has brought it back into focus for me, which has been useful.
Gen: I've just read it and been thinking about it a lot, especially as today I met up with a very dear friend of mine who has cancer and her 7 year old child also has cancer. So I've definitely been having a 'what's it all about' weekend...
Mel: I read the book almost too quickly. I lived it for about 48 hours and then it was done. I wish that I had taken it slower and allowed myself time to think about it as I was reading it. I have thought about many aspects of this book - the life of a surgeon, the life of an exceptional intellect, the life of a caring and compassionate individual - this is what followed me more than the life of a man who died.
Lara: I read it very quickly at the end of January and at least its major themes and how it made me feel continue to stick with me. I would have loved to meet Paul. I see Mel's point - I think it would be good to go back and re-read this one potentially during a future trying time in order to really think through some of the big themes. By showing that cancer can hit anyone, but that it can be faced with dignity and meaning is incredibly important.
Carissa: I often think about several themes of the book. The meaning of life in general and mine in particular. The existence of a spiritual world. The description of the various operations. The need to be open and honest in a relationship,especially a marriage.
12. Is there anything else that you want to say or ask about When Breath Becomes Air?
Gen: It is number 4 on the New York Times bestseller list this week- we are riding the zeitgeist bookclub people!!
Mel: I truly hope that Hollywood never swoops in and tries to make a movie out of this....
Rachel: Oh that would be awful Mel, you're so right. I know I will never forget this book and I am positive I will still think of his wife and daughter in years to come, especially when his daughter is of an age to finally read her father's words for herself.
1. What would you rate this book out of 10 and why?
Carissa: 10. His writing is succinct, thoughtful and inspiring. There are some utterly beautiful phrases. When telling us about diagnoses of inoperable brain tumours, he says "In these moments, I acted not, as I most often did, as death's enemy, but as its ambassador". "When there's no place for the scalpel, words are the surgeon's only tool". There are so many other examples. I shall try and find some that struck me forcibly and add them later.
Sharyn: 7.5. I really enjoyed this book. It made me think more deeply about death and the different ways in which it can be approached. 'Thoughtful' and 'succinct' is the perfect way to describe the writing, Carissa, and that was no doubt a product of the limited time in which Paul had to write the book and the clarity of thinking that his impending death brought about. It is an unusual and unique book because Paul examined his death in a detached and dispassionate way, yet with beautiful, elegant prose. The most beautiful passage for me (at the risk of sounding cliched) was the final message to his daughter: "When you come to one of the many moments in life where you must give an account of yourself, provide a ledger of what you have been, and done, and meant to the world, do not, I pray, discount that you filled a dying man's days with a sated joy, a joy unknown to me in all my prior years, a joy that does hunger for more and more bust rests, satisfied." Apart from being a powerful, comforting and self-affirming message for his daughter to carry through her own life, that passage was interesting because it was the only time when really Paul acknowledged that his personal relationships were as fulfilling as his professional life.
Gen: 8/10. I really enjoyed this book, but like you Sharyn I was surprised that it was a rather detached read rather than a deeply emotional one, perhaps as a result of his very fine scientific mind.
Mel: 9/10. I think that 'When Breath Becomes Air' is a beautiful little book. It heartens me that in this world of ours which often feels cruel and calculating that a book like this is so high on the best sellers list all around the (western) world. We (the public) get treated like imbeciles most of the time by our politicians and the mainstream media and yet there is obviously a groundswell of people interested in Kalanithi's story and his presentation of life and death. I have to agree that it was more of a detached read than I was expecting and I came away thinking as much (maybe more) about his life as a student/doctor/husband rather than his death.
Lara: 8.5/10. I picked up this book in New York in January after reading a few articles about it in the New York Times. It was a beautiful crisp New York day and of all the books in this tiny bookstore, I was drawn to it because it seemed beautiful despite being about something so sad. I was impressed with Kananithi's journey, his questioning mind, his love of both literature and science, and in particular his urgent need to share his experiences and highlight something so fundamental about life in the face of tragedy
Rachel: 9/10 Enjoyed feels like the wrong word but I literally couldn't put this book down. I found it so compelling I finished it within 24 hours. Like you Gen, I was surprised by the scientific focus of the book but this only added to its appeal. It was genuinely interesting to hear about the journey of a medical student and the genius of the operations that neurosurgeons perform. I had feared the book would be a harrowing read but it was remarkably inspiring. In fact, it wasn't until I got to the section written by Paul's wife that sobbed fairly uncontrollably onto the pages.
2. How did you come away feeling, after reading this book? Upset? Inspired? Anxious? Less afraid?
Carissa: Inspired. Even Lucy's contiribution was uplifting, though it made me infinitely sad. The only thing that made me anxious was the thought that Paul Kalanithi must be very rare among surgeons, who probably mostly see patients as cases, rather than focusing on their identities and souls, as he did.
Sharyn: I expected the book to be a real tearjerker and was surprised that I wasn't emotionally moved until the last few pages of the book and then the touching, beautiful epilogue by Lucy. I came away feeling less afraid, partly because Paul had a sense of purpose and achieved some of his goals whilst dying, but also as a result of Lucy's description of the way in which the family came together at the very end and blanketed him in love. Without discounting the physical pain he must have been in, that was a pretty beautiful ending in the scheme of things.
Mel: Sharyn - I agree completely. At no point was I distressed by Paul's death until I read Lucy's epilogue. Paul didn't want his readers to be sad - the sadness and grief of death is not what he was trying to convey. I couldn't say that I am less afraid of death from reading the book - what Paul went through was horrible - both emotionally and physically terribly painful. Paul's death at the hospital surrounded by his family also made me think about how important it is for the loved ones left behind to have the opportunity to say there goodbyes and how hard it must be to loose someone suddenly. And yes I do think that I feel inspired by Paul's - by his life and by his ability to articulate his thoughts about his impending death.
Lara: I would say inspired overall and that's why I wanted you guys to read it too. He certainly has an important message to share and a unique voice that pushes you to think. Of course there is a big part of me that continues to find it hard to accept when fate takes someone so talented and with so much to life for -- but if there is anything I've learned, its that there isn't any justification or rationale -- just better ways to handle what's thrown at you.
Rachel: It was an excellent choice Lara, and I am SO glad you chose it for your selection. I don't think I would ever have ventured to read it if it were not for the bookclub. I echo all of your sentiments. It was very inspiring and it has actually made me start questioning what more I could be doing with my life. Definitely didn't help with my feeling of wanting to escape Singapore and return to my family and close friends..
3. How do you think the years Paul spent, tending to patients and training to be a neurosurgeon, affected the outlook he had on his own illness? When Paul wrote that the question he asked himself was not “why me,” but “why not me,” how did that strike you? Could you relate to it?
Carissa: I could understand it, because of his immense compassion and also because he had seen so many totally inexplicable life-threatening conditions of the brain and other organs.
Sharyn: I think that when you spend years working in any area or profession, you become more emotionally detached by the subject matter than the average person. I know that I feel that way about the area I work in (law/employee relations) and have to some extent become more desensitised to workplace issues such as bullying and harassment and having to terminate people's employment. That must especially be true for surgery, which almost necessitates a person to strip away the emotion so that they can act with clarity and precision in the most stressful situations. When you see people being inflicted with life-threatening or terminal illnesses every day, that must demystify and almost normalize it, so I think Paul's reaction was completely understandable. I would like to think that would be my reaction but I suspect that I would be in the "why me?"/pity party camp.
Gen: I liked this line, as of course most people think 'why me' so it took a great leap to think 'why not me'. I liked how he strongly reminded the reader that this is the fate of all us, it just happened to him in a very intense and short period.
Lara: I loved his perspective. He knows better than anyone what his diagnosis means, but is analytical enough to realise that he's not special or protected from getting something so horrible. I think he certainly had the "why me" moment, but focused on the "why not me" and that helped to ground him as he struggled to deal with his new world.
Mel: I found this confronting as I pride myself on being terminally optimistic. If I need to have medical tests I think that there is just no way that I will have anything bad or wrong. I have 3 tumors in my liver which I need to have a CT scan on yearly. My specialists tells me that I am exceptionally laid back about the whole thing compared to the majority of patients when he mentions the T word. I have always been (although this is decreasing) incredibly optimistic about Ben's MS too. When we got engaged a couple of friends questioned whether this was a road I wanted to go down - near certainty of one day having to care for a husband who might end up blind/in a wheelchair/worse. I just couldn't ever see that happening. So Paul's remarks stopped me in my tracks. Why the hell shouldn't my tumors be cancerous? Why shouldn't Ben's MS become aggressive and totally debilitating?
Lara: Wow, Mel. I was editing when you were and copied your bits into this version so we wouldn't loose them....and then I saw this. I can understand how this would shake you, but I also think that your positive attitude has a lot to do with the fact that the tumors haven't progressed and Ben has done so well. I'd rather be around the positivity.
Mel: I just cut and pasted my responses into a word doc so I wouldn't loose them. Are my answers in green for you? They are for me.
Sharyn: Mel, I admire your positivity In the face of your own health concerns as well as Ben's. I am a glass half-full/worst-case scenario kind of person, which is very unhealthy.
Rachel: Agreed Sharyn, every time I watch the movie Madagascar 2 with my kids, I always relate very strongly to the character of the giraffe - the slightest lump or bump and I fear the worst. Mel, you know how much you inspire me already and reading your words makes me love you even more. Such strength of character. Paul was the same - that chapter when he returned to work to complete his residency and soldiered on through long shifts with gruelling back pain was very humbling to read.
4. Paul had a strong background in the humanities, and read widely throughout his life. Only after getting a Master’s in English Literature did he decide that medicine was the right path for him. Do you think this made him a better doctor? A different kind of doctor? If so, how? How has reading influenced your life?
Carissa: I am certain that it made him a better doctor, both in his approach to the operations he undertook and in the way he discerned the needs of patients and their families and spoke to them. Reading, with his kind of awareness, must, surely, have contributed to his ability to analyse people's personalities and to adjust to all the shocks that he met. His reading must have exposed him to philosophies that helped him to cope with and to lead others to cope with disasters. Reading must also have enriched his experience of life and helped him to use language with such remarkable effect, when describing his own thoughts, philosophies and experiences. He approached literature through the prism of his interest in the brain and the mind and the meaning of life - hence his literature thesis about the poet, "Walt Whitman and the Medicalization of Personality". His study of Beckett, Nabakov, Whitman and others informed his approach to medicine. He often quotes from writers, when confronted with a medical situation. I have no doubt that reading has enriched my life. I have read about things that I could never experience. I have read thoughts and ideas that are expressed in a way that helps me to express my own. Reading takes me beyond my own little life.
Sharyn: I share your sentiments, Carissa. Above anything else, reading exposes me to other people's perspectives, which makes me a more empathetic person. I am always shocked at the lack of bedside manner of doctors. Paul seemed to have a deep understanding of the importance of his relationship with patients and their family, which was no doubt influenced by his passion for literature. I was struck by the way that he focus;.ed on the quality and meaning of life and would ask families faced with a difficult decision about whether to artificially support a loved one's life to consider whether they would be the same person if they lived.
Gen: Yes I think so too, especially as so many doctors are very focused on their particular specialty (as they have to be often from very young as it takes so much time and effort to be an expert) that they sometimes forget the 'bigger picture' of treating a whole person not just a disease- so I think his wider experience helped him to have a deeper sense of humanity.
Lara: Absolutely it made him a better doctor. I think being more well-rounded in particular the combination of humanities and science gives him a perspective and empathy that so many doctors lack. I felt that it would have been a privilege to meet him - what an intellectual powerhouse, but with a massive dose of humanity.
Mel: I was astounded by Paul's ability to be such a deep thinker on such a wide range of subjects at such a young age. His love of literature was fascinating, and yes I do believe it made him a different/better doctor as I think that it would have made him far more reflective on his work and the way in which he engaged with his patients.
Rachel: Yes, that passion for literature which comes hand in hand with empathy for the human experience was exactly what made Paul the great doctor he clearly was. I could see so clearly how so many of these surgeons you meet develop god-complexes and get lost in their ego (my sister is an IC nurse and is very scathing of some of the millionaire surgeons she works alongside). What was wonderful about Paul was his only humility and moments of self-reflection and self-checking (e.g. the cadaver chapter) in his handling of critically ill patients and their loved ones. He valued dignity and was astutely aware of the consequences of that being taken away from someone.
5. What did you think of Paul and Lucy’s decision to have a child, in the face of his illness? When Lucy asked him if he worried that having a child would make his death more painful, and Paul responded, “Wouldn’t it be great if it did,” how did that strike you? Do you agree that life should not be about avoiding suffering, but about creating meaning?
Carissa: At first, I felt concerned for the child and wondered whether this was a selfish decision, but the child would inherit a very special genetic make-up. We know little about Lucy, except that she had the strength to tell Paul that she needed time on her own to work out what to do, if they seemed to want different things from marriage, but then to put her concerns behind her and be totally supportive of him, when she discovered that he was so ill. Also, she wrote that beautiful final chapter. She is obviously a pretty special person. Paul is an exceptional person, as are his parents. His mother, coming from rural India, takes on the education system in Arizona, to improve it. She is a very spiritual and devout person, with a deep sense of philanthropy. Added to this, I think it is understandable for a couple, who had planned to have a family, in due course, but are suddenly about to be separated by death, to want to have a child before it is too late. It is a very big decision, but infinitely preferable, I think, to "freezing" genetic material, to be decided about by the survivor. Lucy risked having a hard struggle, nursing Paul, as well as being pregnant and then looking after a helpless baby. Then, as a widow, with a small baby, working will be difficult, but Paul and Lucy are not the kind to be deterred by difficulty. I am not sure that I understand Paul's remark about pain, except, possibly, as an ironic reflection on the pain that he is in already. Or, could it be associated with his search for the meaning of life? I think that part of the meaning of life is to alleviate suffering in others, if possible, and, if not possible, to help people to work out how to cope with it. Experiencing suffering oneself certainly helps one to understand what others suffer. If you have lost somebody close to you, you are more able to comprehend the pain of grief felt by others. If you have experienced failure, disillusionment, or betrayal, you may be better equipped to help others overcome the pain of these experiences.
Sharyn: Yes, it must have been a difficult decision. Having a newborn baby is demanding and all-encompassing and so I could relate to Lucy's concern that it would overshadow Paul's remaining time and possibly even detract from their remaining time together. It must have been heartbreaking for both of them knowing that their child wouldn't grow up with its father.; However, I would have wanted a child if I was in Paul and Lucy's position. I am reminded of that saying which goes something like: to love and to lose is better than not to love in the first place. Their decision to have a baby was very much in line with Paul's philosophy approaching death, which was to create meaning and purpose. I really admire and am touched by that. I think his quote speaks volumes about his love for life and about how the more achingly beautiful your life is and your relationships are, the more painful death will be, but how that is totally worth it in the end.
Gen: I can totally understand the desire to create a continuing genetic piece of him that would carry on after his death. I really admired his focus on life as having meaning not just happiness or an easy road.
Mel: I totally understand their decision to have a child together - as individuals and as a married couple.. You don't really get a sense from Paul about just how challenging it was to have a new born baby in the house while he was dying. But I guess by this stage Paul would have got to have some lovely cuddles but not been able to be much more hands on that that, while Lucy would have been bearing the brunt of no sleep and stretched and stressed beyond my wildest imagination.
6. Given that Paul died before the book was finished, what are some of the questions you would have wanted to ask him if he were still here today?
Sharyn: I would want to ask him whether that 7 or so month period where he went back to neurosurgery after being diagnosed and treated for lung cancer was really worth it. I can't help but think it contributed to his death, or at least the speed of his death. It cannot be healthy, even for a person in good health, to work those hours and endure that physical and emotional stress. Whilst he got to graduate, it meant less time with his family and less time writing, which I feel had become a greater priority at that stage. I would also ask him whether he was satisfied with his oncologist. In one sense, her philosophy complimented his because she refused to engage in discussion on his life expectancy and instead suggested that he make decisions about the future according to his "values". It was interesting to note that when she finally told him how long she thought he would live (5 years left), she was wrong: he only had months left. It is scary to think that one of the leading specialists in the area can get it so wrong. I would have been annoyed about that!
Gen: I did wonder about the connection between the extreme stress of his job and the development of such a terrible disease... and would like to know more about what he thought about that.
Mel: A great question indeed. I admit that I winced when Paul decided to go back to surgery. It just seems to be such a punishing lifestyle. In fact, that is the essence of my question. Paul details vividly the hard work, exceptionally long hours, high pressure, almost marriage ending existence of being a surgeon. Paul's take on his residency is that he really had no other life but the residency. So I guess my question would be is there any point that he would have changed direction and lived a life that was less stress inducing and allowed him to experience more of the world outside the OR?
Lara: I think considering the sacrifice that Paul had already made in order to be a neurosurgeon, I understood his mindset, but it made me think what I would do and while it would have been satisfying to see it through, I would have felt guilty about not spending that time with my family. Still, it was so central to his life, it was really the only decision for him to make - even if it sped up his death.
7. Paul was determined to face death with integrity, and through his book, demystify it for people. Do you think he succeeded?
Mel: I certainly think that Paul faced death with the utmost of integrity, but death can come to us in so many forms that I wouldn't say that I feel that it has been demystified for me.
Lara: I think death will always remain a bit of a mystery, but I think there is so much we can learn in terms of how to approach it, the attitudes we have towards it (think of how Mexico handles/celebrates the Day of the Dead in such contrast to more anglo-saxon attitudes), and perhaps how to accept it with grace after fighting as hard as you can to live. I came out of the book with huge respect for Paul's search for meaning and I think we all have to go through that journey in our own way.
Carissa: I should have wanted to ask him what he thought lay beyond death. Had he seen any spiritual clues among those whom he saw die and among their loved ones. He wrote that love, hate,hope, fear, passion, beauty, honour, duty were not measurable by science and yet were part of being human and so they were supernaturally made attributes. What happens to these aspects of humans when they die physically/medically/scientifically?
Sharyn: Yes, that would have been interesting to know. If my recollection is correct, Lucy's epilogue referred to the fact that Paul was quite religious. It would have been interesting to know how he reconciled the scientific and spiritual views on life after death.
RacheL: No, I'm not sure he does. Integrity absolutely, but demystify not at all. He was simply too ill to write through the final days in the lead up to the death. That final section of the wife's epilogue where they are all with Paul in the hospital room awaiting his final breath is a tough read and for obvious reasons there are a lot of medical details that are left unmentioned. I just don't get it - if I'm the one in the bed, am I scared, am I struggling for breath, am I in pain? I know it sounds macabre but I suppose this is where my fear of death and the unknown lies. AS you say Lara, mystery does remain and I guess II chose for it to remain until I no longer have that choice. As mentioned above, my sister has worked for a long time on an intensive care unit and I know that she, and the likes of medics similar to Paul, see the hard cold reality of death in a way that none of us do. It has definitely shaped her attitude to life and I know there are times where she goes 'dark' as a result of what she witnesses on her ward. Yikes, its Friday night and I'm starting to feel really melancholy. Wish we were all having this discussion together over some bottles of wine...
8. In Lucy’s epilogue, she writes that “what happened to Paul was tragic, but he was not a tragedy.” Did you come away feeling the same way?
Sharyn: Definitely. He had a loving family. He achieved his dreams. He got to indulge in two very different passions: literature and medicine. He faced death with bravery and integrity.
Mel: I love these words and I think that they are perfectly expressed about Paul. Paul dying so young is tragic as I do feel that the world has lost out on his intellect and his kindness. But his death is not a tragedy as such as he had achieved so much and he was able to say goodbye to his loved ones personally and leave behind this book that we can all gain from.
Lara: When I recommend this book to others, that is basically what I say -- i.e. I describe the tragic circumstances, but I reinforce that what this book describes is truly beautiful and offers an important and inspirational narrative on a tragic situation. Some people buy it, but I can see others don't want to go there. Their reaction tells me about them too.
Carissa: I certainly did. Paul was the opposite of a tragedy. He had succeeded way beyond most people's aspirations and abilities. He had helped countless patients and their families to re-capture their identities, find new ones, or to adapt to enormous changes. He had contributed to neuro-scientific research. He had been a warm and affectionate son, brother and husband. He had even had a tiny chance to be a father, whose daughter will grow to feel she knows him, thanks to his letter to her and to this book.
9. Lucy also writes that, in some ways, Paul’s illness brought them closer – that she FELL feel even more deeply in love with the “beautiful , focused man” he became in the last year of his life. Did you find yourself seeing how that could happen?
Sharyn: Yes, totally. I imagine that when you are faced with a terminal illness you strip away all the distractions and petty worries from your life and focus on what what really matters. This must enhance the quality of your relationship and make the remaining time together so special.
Gen: Yes I agree Sharyn and this is a such a common thing you hear when people have gone through something like this- and yet we all just get caught up in the pettiness of life rather than appreciating every small moment- why is it that it is so hard to have this appreciation without going through the near death/death experience? I read this quote once from the actor Timothy Spall who recovered from leukaemia:
"The experience, he says, was profound on every level. “When I was ill, I can remember going into the park, looking at a tree and thinking, 'That will do me. That tree, right here and now.’ To be alive and to be seeing it felt profound.
“But you can’t stay in that state of profundity forever. You don’t forget the state, but what you want most is normal life and to afford yourself the luxury of a moment of boredom, which, when you’re dying, you don’t have.
“I knew that I was truly recovering when I could start being unreasonable again. Ranting at a traffic jam is not a luxury afforded to a dying man.”
Mel: Yes, I do see how that could happen. Health is everything, and when you don't have it your whole life gets stripped back and then when you are well again you tell yourself that you will properly appreciate every aspect of the life you have missed while you were sick. But of course it doesn't last.
Carissa: Yes, I found that very likely. They were both living each day with heightened awareness. They were both noticing each other and their surroundings in the way that Timothy Spall looked at the tree - positively and with thanksgiving, dwelling on the best and most precious in each other. In addition! They were filled with the wonder of the birth of a new little being, who was part of them both.
Sharyn: That quote by Timothy Spall is spot on!
10. How did this book impact your thoughts about medical care? The patient-physician relationship? End of life care?
Sharyn: I am still grappling with this question. On the one hand, it's so much better as a patient to have a doctor like Paul who is sensitive to his patient's and family's emotional needs. On the other hand, this must add another burden to an already stressful job. I can't help thinking that surgeons need to be emotionally detached and clinical in order to be able to make fast decisions under pressure, and also as a self preservation mechanism. I wonder if the guilt that must accompany the job is much greater when you are more emotionally attuned like Paul.
Gen: I thought the discussion about whether you were better or worse off having knowledge and people treat you that knew you was an interesting one
Carissa: It reminded me that the quality of medical care is dependent on individuals. Paul Kalanithi was an exceptional doctor. He did not seem to me to get too attached to his patients. He was aware of their emotional and spiritual needs and of those of their families. He was particularly interested in the value of the patient/physician relationship. He saw the physician's role as that of guide and protector until the patient had recovered sufficiently to make his own decisions. His skill as a surgeon was obvious. It made me realise what an incredibly complex profession medicine is, especially neuro-surgery. A surgeon has to be extremely dexterous and to have immense powers of concentration and physical strength. It was interesting to read about Kalanithi's reaction to being a patient. He records how Emma says that, while she knows that he is capable of planning his own chemotherapy treatment, she is also ready to do this without consulting him, should he decide just to be a patient. I agree with Gen that it was interesting to hear that doctors do not do such a good job of treating those they love. I should like to know more about why that should be the case.
11. Is this a book you will continue thinking about, now that you are done? Do you find it having an impact on the way you go about your days?
Sharyn: I did find myself thinking about the book and committing to a more meaningful life in the days after I finished the book. However, as tends to happen, I got caught up with the daily distractions again and forgot about it. Spending time answering these questions has brought it back into focus for me, which has been useful.
Gen: I've just read it and been thinking about it a lot, especially as today I met up with a very dear friend of mine who has cancer and her 7 year old child also has cancer. So I've definitely been having a 'what's it all about' weekend...
Mel: I read the book almost too quickly. I lived it for about 48 hours and then it was done. I wish that I had taken it slower and allowed myself time to think about it as I was reading it. I have thought about many aspects of this book - the life of a surgeon, the life of an exceptional intellect, the life of a caring and compassionate individual - this is what followed me more than the life of a man who died.
Lara: I read it very quickly at the end of January and at least its major themes and how it made me feel continue to stick with me. I would have loved to meet Paul. I see Mel's point - I think it would be good to go back and re-read this one potentially during a future trying time in order to really think through some of the big themes. By showing that cancer can hit anyone, but that it can be faced with dignity and meaning is incredibly important.
Carissa: I often think about several themes of the book. The meaning of life in general and mine in particular. The existence of a spiritual world. The description of the various operations. The need to be open and honest in a relationship,especially a marriage.
12. Is there anything else that you want to say or ask about When Breath Becomes Air?
Gen: It is number 4 on the New York Times bestseller list this week- we are riding the zeitgeist bookclub people!!
Mel: I truly hope that Hollywood never swoops in and tries to make a movie out of this....
Rachel: Oh that would be awful Mel, you're so right. I know I will never forget this book and I am positive I will still think of his wife and daughter in years to come, especially when his daughter is of an age to finally read her father's words for herself.